Behind my infectious giggle, loving nature and fondness for trouble lies a long story.
Hi, I'm Holly (aka The Angelic Anarchist thanks to my computer nerd father). I'm now 5, and I have Angelman Syndrome, a genetic disorder. In simple terms, part of one of my chromosomes is missing.
This means that I have severe special needs, I cannot talk or walk at the moment, and a perception of the world that would defy Freud. I also have drug controlled epilepsy.
However, despite this, I am a happy little girl, with a love for life, causing trouble and general mischief. I like making new friends in my own special way.
I will require lifelong care- but then so will my parents !
In 2004, the olds set up my website The Angelic Anarchist to spread a positive view of dealing with an Angelman Syndrome diagnosis.
Its great- because in cyberspace, I get to air my thoughts in a way that I cannot in real life. And never will be able to. Whats more is that other angels are taking my lead, and training their parents through the website too !
The name comes from the practical turmoil that somebody with my boundless energy and limited attention span can bring to a household. And those with Angelman Syndrome are known affectionately as 'angels'. It seems to have struck a chord the world over !
To date, I have managed nearly 10,000 hits (the bruises don't show, honest!) and lots of gang members around the globe (Which my Dad tells me is further than Sainsburys).
I now live full time with my Mum, attend a special school in Wiltshire, and get to spend every other weekend (at least) with my Dad. Both of them refuse to let my royalty stand in the way of us all living life to the full. With a smile.
For more details of Angelman Syndrome, please visit the ASSERT website of which my Dad is a trustee.
Who I'd like to meet: Fellow cheese lovers, gang members and trouble makers. ! And anyone else who wishes to become an angelic anarchist.
Holly-The Angelic Anarchist's Friend Space (Top 17)
Hey you, how you doing?? I am really well. Now crawling and climbing and generally into everything - mum is going greyer by the minute LOL LOL ;-) Started nursery last week and I am having so much fun, its nice to be out and about and having fun with my friends at school. Mum also like the 3 hours off, bet she misses me though! Its my birthday next Monday so I am meeting with some Angel friends on Saturday - usual place Hop Skip and Jump. I know its a little way for you, but if you are free we will be there from about 1.30 until 4 causing havoc.
Hey bud, how you doing? Apparently I am starting nursery in a few weeks time, whats that all about? Went for a visit and it was fab - this huge room to crawl around and no one telling me to stop ;-) Will let you know how it goes.
